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Practical perspectives on cancer treatment by thought leaders, explaining how they would approach the treatment of a patient in their area of expertise.

Wednesday, August 28, 2013

PAUL HELFT: Talking to Patients about Difficult Issues… How I Do It

Paul R. Helft, MD, is Associate Professor of Medicine in the Division of Hematology/Oncology at Indiana University School of Medicine and the Indiana University Melvin and Bren Simon Cancer Center, as well as Director of the Charles Warren Fairbanks Center for Medical Ethics at Indiana University Health.

I have spent my whole practice career in an academic environment, and have learners at various stages who work with me in both inpatient and outpatient settings. I tell all of our hematology/oncology fellows who begin a rotation with me -- only partly facetiously -- that oncology is easy, but talking to cancer patients is hard.

I truly believe this to be the case: that providing communication that accomplishes the many challenging tasks that are necessary in the context of the doctor-patient relationship with cancer patients is a herculean task.It is also a set of skills in which we provide trainees the least direct training. Any one of the many difficult types of conversations we engage in merits an extensive discussion: an informed consent conversation for standard or experimental chemotherapy; about risk of recurrence and the role of adjuvant therapy; about prognosis in the setting of a newly diagnosed or advancing life-ending cancer; about cessation of disease-directed therapy and the transition to end of life care.There are many others.

The best way I have found to teach the many skills needed for such complex and emotionally charged types of communication is to discuss with trainees the strategy we might take for a given conversation before going in to see patients together, to model the behaviors I have found to be most effective, and to discuss and analyze the process after the fact.

The following are observations I have arrived at following 15 years of study, practice, analysis, and research into complex communication between cancer clinicians and patients. These are in no way meant to serve either as a scholarly treatise or a comprehensive review, both of which are available in several forms in other literature. By the same token, many others have practiced, developed, written about, and studied ways of engaging in effective and compassionate conversations with patients, so I do not want to suggest that there is one right way.

1. Building trust is the single most important task

Nearly all of the most difficult tasks that face those of us who care for and communicate with cancer patients rely on trust.Think of the times when patients and their families have left your practice for good or when communication interactions have not gone well. Underlying these are frequently issues of trust. For patients to feel comfortable with our recommendations about prognosis and therapy, they must first trust us.

Decisions regarding cessation of disease-directed therapy in the setting of advancing illness only go well when there is substantial trust established. It is helpful to think about trust like a bank account: Sometimes, the account is full -- even without effort (think of the patients who arrive at their first visit after having been told what an amazing clinician you are) -- and sometimes it is empty and can only be slowly and painstakingly filled. What goes into the account can be “spent” later during times when a difficult decision relies on substantial trust, or when missteps happen (e.g., we forget something vitally important about the patient or his or her test results).

The behaviors that help establish and develop trust are those that demonstrate caring -- active listening, acknowledgment of emotion, committed presence, appearing unrushed, knowing and remembering details about the patient, and many others.

2. Ninety percent of communication is non-verbal

Communication experts teach us that only 10 percent of communication is in the words chosen. The rest is non-verbal (e.g., body language) and tone. Yet, we spend most of our effort on choosing the words. Mindfulness of one’s non-verbal communication takes some effort, but can be highly rewarding: where and how to sit with respect to the patient, what expression to wear on one’s face, appropriate eye contact, how and when to use touch, how to modulate one’s tone or use vocal mimicry as a sign of respect and caring. These are all issues that can have a major impact on the quality of communication.

All of us have experienced patients and family members who seem to remember little of what was said, especially under stress. But they always remember the sense that they were in the presence of a committed, empathic, and caring clinician. That impression does not come from the carefully chosen or scripted words we choose.

3. Spend more time listening

So many of the pressures we face in routine patient care push us to listen less: we try to make history-taking and review of systems and symptoms as efficient as possible; all of us experienced clinicians work from a kind of script (e.g., my “speech” about stage III colon cancer or about the risk of recurrence of pancreatic cancer).

These are “macros” that make communication more efficient for us. Taking more time to listen accomplishes two major, important things: first, most of the things that really make a difference in a patient’s care are subjective to them. We can only account for those things if we ask, and then listen carefully to the answer. Listening to patients’ descriptions of what they are most scared or most angry about, or what they feel they don’t understand well can make conversations both more effective and more efficient.

Second, really listening to patients talk about both the emotional and cognitive aspects of care (“What are you most afraid of?” “How do you think you’re doing emotionally?” “What are you having the hardest time processing?”) inspires the sense that you really care, and thus leads to trust and respect in profound ways.

4. Start every important conversation with “What do you understand about… ?”

When I meet a patient for the first time, after reviewing records, taking a history, and doing a physical examination, I try never to launch right into my “speech” about the summary of their condition, prognosis, treatment options, etc. Instead, I ask them what they understand about their cancer and overall situation, what they are hoping to get out of our encounter, and I try to get a sense of who they are and what pre-conceptions they have based on research they may have done coming into the encounter.

Although this takes five to 10 minutes to listen carefully to, I find that it helps me to frame my remarks much more effectively. By the time I have listened to the patient for these few minutes, I can usually tell if they are starting with almost no information or whether they have researched their situation extensively and sought other opinions already. I can tell if a person is afraid of chemotherapy or desperately wants to begin as soon as possible. I also can usually uncover any profound misconceptions which many people walk in with, and then I know what major hurdles we will have in reaching a mutual understanding.

5.Check your anxiety at the door

I am convinced that many of our own anxieties interfere with our ability to offer therapeutic presence to patients and families. It is indeed highly anxiety-provoking to give terrible news to someone whom you already know as highly anxious and emotional. But I have found that having a “toolbox” for such interactions allows me to operate on a more solid footing. I remind myself that the interaction is not about me, but about the patients and their families.

I always give a warning that important, negative, or scary information is coming (e.g., somber demeanor and expression, a verbal warning that I have some “bad news” -- or equivalent). If I don’t know the patient well, I ask explicitly if it is okay to share negative information with them right now, and offer a later time if they don’t feel up to it; I ask if it is okay to share it as plainly and honestly as I can. They rarely refuse this, but my belief is that this gives people a great sense of being respected and makes them feel a little more in control.

When patients begin to weep or tear up, I stop talking and acknowledge their emotion verbally or non-verbally.I scoot my chair a little closer and sit with them in silence until they are ready to talk again. If family members become uncomfortable and try to break the silence, I nod toward them but continue to focus on the patient. I talk only after the patient has said something. This rarely lasts longer than a minute or two, but I once sat silently for 15 minutes.

If you do this, the patients will know that you will not run from them because of hard times and will be grateful that you did not become anxious, run away, fill in the silence, or say something glib (e.g., “You have to take every day one day at a time.”) I do not offer tissues unless the patient looks around or asks for them, because I feel it sends a message to clean up and stop crying.

6. Talking about prognosis is one of the most important and most difficult tasks for cancer clinicians

Broadly speaking, there are really two types of prognosis conversations: The first (and less challenging) is with a patient who has potentially curable disease and where the focus is therefore on the chances of cure (or, conversely, the risks of recurrence).This type of conversation can be highly anxiety-provoking, but there is always a built-in source of hope for patients, and so in my mind they are “easier.”

The second is the more classical conversation, so common in oncology, in which patients are really concerned with how long they will live given that their disease is incurable. These conversations are difficult in myriad ways, but mostly because they require finding other sources of hope.

Here are a few pearls I have learned.Patients sometimes ask for this information in roundabout ways: “I was wondering about, you know, time frames.”If I think they are asking about their prognosis (i.e., a numerical estimate of life expectancy), I ask them if that is what they are asking and if they truly feel ready to talk about it. I think this step is very important because sometimes they are asking a different question, sometimes they ask but don’t actually feel ready to talk about it fully, and because taking this step to clarify their preferences is experienced as a respectful gesture.

I ask them if they would like numbers or qualitative estimates (e.g., not very much time, weeks or months vs. years). Next, I tell them I have a long answer. I make sure they know I don’t actually know, but rather can make an educated estimate based on knowledge and experience.It is important to acknowledge that we are sometimes wrong (because we are).The further away from death patients with life-ending diagnoses are, the more inaccurate clinicians are, and I try to acknowledge the amount of uncertainly I have at any given phase of the illness. Then I try to give them an average life expectancy surrounded by a range of best- and worst-case scenarios.

I try to have a careful conversation about the fact that the disease is incurable and to clarify the actual goals of therapy. I acknowledge how hard such information is, and then try to process the emotional impact of the discussion with them.

There are a number of other important principles and techniques I and others employ and would encourage readers to take in some of the rich literature in this area. There are also other highly challenging conversations the average oncologist must engage in: discussion of adjuvant therapy, making complex decisions involving major trade-offs of quality and quantity of life or risks and benefits of therapy, informed consent for clinical trials, and many more.

I am convinced that many important tools of effective communication are both teachable and learnable, so all of us have the opportunity to become better at this most important clinical skill.

Dear Dr. Helft,
Thank you for your eloquent and most useful summary. I especially appreciated your comments about mindful non-verbal communication, as well as about the risk of misinterpreting the handing over of tissues as a signal to stop crying.
With hope,
Wendy
Wendy S. Harpham, M.D.

Practical perspectives on cancer treatment by thought leaders, explaining how they approach the treatment of a patient in their area of expertise.

As the blog’s Editor, RAMASWAMY GOVINDAN, MD, OT’s Clinical Advisory Editor for Oncology -- Co-Director of the Section of Medical Oncology and Professor of Medicine at Washington University School of Medicine, Alvin J. Siteman Cancer Center -- notes, “While all of us want to see more patients enrolled in well-designed clinical trials, this series is all about how one treats patients “off-protocol” in routine clinical practice. Practice patterns vary, since we do not always have firm data for every single clinical scenario.”

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